Men Are From Mars

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With Father’s Day this weekend, I wanted to take the opportunity to talk about my other half.  The partner to my Misbehaving Uterus: the Sad Sack, the Bad Balls, the Naughty Nuts (thanks, KK for your clever naming, I wouldn’t have gotten here on my own!)

The male experience of miscarriage is so often overlooked.  It’s always the woman’s account that’s reported on in the news.  It’s the woman who receives the majority of our concern and all of our postpartum care.  There are plenty of reasons for this, not the least of which is a societal expectation that men should be stoic and unemotive, but the reality is that men grieve too, it just looks different. 

In the immediate aftermath of my losses my husband, like me, was deeply sad.  We held each other.  We cried.  But while I continued to wallow for days following each loss, he was able to recover his equilibrium, and so assumed the role of my caretaker.  He cooked our meals.  He brought me tea and water.  He let me watch whatever I wanted on Netflix without any complaints. I sense that he did this, in part, because being useful and of service allowed him to focus his attention away from his darker, sadder emotions. 

Regardless, from a relationship standpoint, these times fostered closeness and connection.  We were experiencing acute grief, but we were together, and we were relying on each other.  I was being cared for, as I needed; and he was given a purpose, as he needed.  In the months following our losses, those feelings of unity and shared experience were harder to maintain. 

It was easier for my husband to return to his “everyday life” than it was for me.  He was able to supplant his pain with a fervor and focus on work which I couldn’t muster.  Books will tell you that men recover more quickly from the pain of miscarriage.  I think this is because for men, the loss is strictly emotional.  Miscarriage happens inside a woman’s body, so the physical pain on top of the emotional pain, the feeling of violation and personal failure is impossible for a man to understand.  My pain endured, while my husband seemed to recover.  As a result, I began to emotionally pull away.  I felt abandoned and alone in my sadness. 

Simultaneously, my husband began shielding himself as well.  He felt guilty in his recovery. Aware that I was still grieving; he didn’t ask for what he needed because he didn’t want to overburden me.  And on those occasions when he did reach out with need, I was unable to meet him because my tank was already empty.  It was an extremely challenging time for our marriage.  We each felt so vulnerable that neither of us was able to ask for what we needed to feel close again.  We were both still hurting, it just looked different.   

I asked my husband if Father’s Day was met with the same jealousy and sorrow as Mother’s Day is for me, but he said no.  Yes, he wants to be a father.  Yes, he sometimes has moments of envy.  But the harder part for him has been watching me go through miscarriages and treatments.  He said it was like watching me be repeatedly abused without having the ability to stop it. 

The definition of “paternal” is showing kindness and care associated with a father; being protective, vigilant, or concerned.  Paternalism is also the mores for great men in American society.   My husband is certainly not representative of all men, but infertility challenged his male convention.  My miscarriages made him feel powerless and impotent when he longed to be virile and strong.

Through couples’ therapy and continuous work on communication, we’ve been able to take down some of the walls that miscarriage created.  We understand one another better, though our work is not done.  And despite our challenges and the different ways we grieved, I would not have survived pregnancy loss without him.  So, to my husband, and to all the would-be-fathers this weekend, thank you.  Father’s Day may eventually be yours too, but the craft of the father does not necessarily require children. Thank you for your attentiveness, your security, and your care on this journey. 

Striving for Empathy

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It’s hard not to be overwhelmed by the current state of our nation.  I’ve been trying to process my own feelings all week. I do not consider myself an appropriate authority to discuss race relations, and I didn’t start this blog to discuss current events.  But I can talk about grief.  I understand grief.  And I think that George Floyd’s death and the resulting protests are emblematic of the profound grief being experienced by many Americans. 

We tend to think of grief as a five-step linear process: denial, anger, bargaining, depression, acceptance.  That was the original grief model described in the 1960’s by Swiss psychiatrist Kubler-Ross after working with multiple terminally ill patients.  However, as our understanding of loss has evolved, new models have been introduced.  The most helpful I’ve seen is the “kaleidoscope of grief” which lists eight common feelings/thoughts that come and go in no particular order in the months following a loss.  These eight feelings are: 

  • Deep sadness, because you find the situation unacceptable, but can’t change it
  • Loneliness and longing for what you have lost
  • Trying to escape the pain by doing anything for relief
  • Getting on with your life and putting the past behind you
  • Accepting the situation and feeling like you will be alright
  • Questioning your sanity and seeking reassurance
  • Trying to make sense of the loss by blaming yourself (guilt) or someone else (anger)
  • Shock and denial in order to protect yourself from the impact of the loss

Since early March the world has been adjusting to a new social reality.  Hundreds of thousands of families have lost loved ones; and those of us who have not, have still dealt with the loss of our “before lives.”  We lost our sense of control and safety.  We’ve been isolated from loved ones and missed important life events.  We’ve lost jobs and incomes.  And we’re losing hope that things will ever be the same again. 

For me, and maybe for many of you, it’s easy for me to diagnose many of my quarantine actions using this kaleidoscope of grief.  I’ve been very lonely and missing my family; I’ve tried to escape through hours of Netflix; I’ve sought reassurance from many people that my quarantine actions were “appropriate”; I’ve blamed elected officials; and I’ve tried to downplay the virus and ignore its impact.  Because I can see my own behaviors through the lens of loss, I can also find the compassion for my fellow Americans who are reacting differently.  Our world has changed, and we each walk our own path to acceptance.

It has been harder for me, and maybe for some of my readers, to find the same compassion for the rioters.  Like many white Americans, I was deeply saddened by George Floyd’s death and understood the protests.  But I could not rationalize the violence until it was framed for me in the context of grief.

I assume many of my readers have experienced or know someone who experienced pregnancy loss or infertility.  If so, you understand the waves of emotions that crash over you after each failed pregnancy or each unsuccessful cycle of trying to conceive.  You understand the immense frustration that builds watching other people – no more deserving than you – build a family when you can’t.  You understand the utter desperation from feeling like you’re doing everything right but are unable to achieve your goals.  You understand the anger and rage that follows the insensitive, ignorant comments from people who have no experience with your pain.  There are times when you want to lie in bed all day and cry.  There are times when you want to run around screaming at the top of your lungs.  And there are times when you want people to see you – really see you – and recognize the depth of your agony, even if they can’t do anything about it.

But we move past infertility.  Even though our feelings of loss may never completely go away, in one way or another we all stop trying to conceive.  But you don’t ever stop being black.  So, I can understand how the recurrent experience of injustice and inequity would sometimes become too much to bear.  I imagine it must be the ultimate loss to realize that the system doesn’t work in your favor.  In that situation, I might get angry and want to break shit too. 

This Little Light of Mine

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Several years ago, in the lobby of my therapist’s office, I saw a magazine with a cover story talking about women “having it all” (or something similar).  This may have been in the wake of Sheryl Sandberg’s “Lean In,” or it may have been after Hillary Clinton won the democratic nomination for president, but whichever incredibly successful woman inspired the magazine article, it seriously pissed me off.  I remember taking a picture of the cover and starting my session off in a terrible rant about the unrealistic expectations placed on women.  I’m guessing the article (I didn’t read it) talked about home life and work life and not having to choose.  Much has been written about this and I don’t want to rehash the debate other than to say that I read “Lean In,” and while I thoroughly enjoyed it and discussed it with many colleagues, both male and female, I agree with what Michelle Obama said during the Brooklyn stop of her “Becoming” tour – that leaning in doesn’t always work – we can’t have it all, at least not at the same time. 

In the throes of recurrent miscarriage, I couldn’t lean in at work and at home.  It proved impossible to maintain my pre-miscarriage level of commitment to my job.  I had too many balls in the air and not enough time to manage my feelings. My efforts to juggle everything at once ended with me in total burnout, curled in the fetal position in my shower, sobbing. 

I have always expected big things from myself, and I have usually been successful in achieving them.  Therefore, I expected to be able to overcome my infertility by simply applying the same focus and tenacity I used to tackle problems at work; and I expected to do it without sacrificing my professional dedication or compromising my career progression.  But often unconsciously, and occasionally unexpectedly, my career ended up taking a backseat to family planning.  Sometimes it was for little things like needing leave early or come in late due to doctors’ appointments.  Other times it was for big things like missing key strategic meetings with affiliates because their office was in a Zika zone. 

These choices were completely understandable.  The problem was that I didn’t feel comfortable sharing why I was making them.  I was ashamed of my miscarriages and terrified of showing signs of grief in the workplace.  My work persona was strong and confident – a responsible, engaged, go-getter – and I was afraid my colleagues and management would view me differently if they glimpsed any vulnerability.  So, I put on a mask of stoicism and pushed through.  The weekend after my first D&C I got on a plane to Japan for a two-week business trip.  In the hours after I learned my 4th pregnancy was not progressing, I flew to Germany to see a supplier.  And the morning I started bleeding during my 5th pregnancy, I drove from Chicago to Milwaukee to lead a half-day business meeting.

In retrospect, it’s almost laughable that I didn’t anticipate an eventual collapse. But I was so focused on maintaining control, I didn’t couldn’t heed my own warning signals.

After the half-day meeting in Milwaukee, I went into my supervisor’s office intending to tell him, very calmly, what I was dealing with.  Instead, I burst into hysterical, uncontrolled sobbing.  He was dumbfounded and probably frightened.  I was mortified.  One of the best ways to avoid burnout is to turn to other people to ask for help.  Had I been more willing to share the news of my current pregnancy and history with him earlier, he would have understood my reaction and probably given me the option of not attending the meeting in the first place.  By staying silent, I never gave my employer or supervisors the opportunity to give me the support I needed. 

Burnout is “a state of emotional, physical, and mental exhaustion caused by excessive and prolonged stress.”  This article explains it well.  It’s hard for me to determine whether work stress or miscarriage grief contributed more, but in the end, it doesn’t really matter.  My miscarriages made me feel like a failure, and suspicions of insufficiency crept into my work.  My role was demanding, and my fertility treatments were overwhelming, so I was emotionally and physically drained and lacked energy to engage in activities that might have filled me back up.  My deep sadness over not having a child made it difficult for me to find meaning in my job. Top it off with perfectionist tendencies and facing the stark reality that I was not in control, and it was a recipe for disaster.

If I could go back in time and talk to my former self, I would ask her to slow down and give herself the space to feel.  The suffragist Elizabeth Cady Stanton said, “The woman is uniformly sacrificed to the wife and mother.” I sacrificed myself trying to become a mother.  I became an unmotivated, dispassionate, depressed version of myself that I neither liked nor recognized.   

My husband and I stopped trying to build our family naturally last March.  This released some of the day to day pressure of treatments, but my feelings of inadequacy and hopelessness were too deeply rooted, and in November of last year I resigned.  It was undoubtedly one of the hardest decisions I’ve ever made in my life.  It felt like jumping out of a plane without a parachute.  I felt like failure and a quitter.  I feared I would go broke.  I worried I’d never get rehired.  But when I finally did it, my body exhaled.  I held so many things so tightly for so long.  When I let go, it was as if I jumped into the Frou Frou song of the same name: “It’s so amazing here.  It’s alright.  ‘Cause there’s beauty in the breakdown.” The release lives in my memory and my muscles.  Even as I type this, I can feel my breathing slow, and my shoulders drop. 

It’s been six months, and I’m slowly recovering.  The first month, I didn’t do much of anything.  It was December; I decorated the house and watched Christmas specials on Netflix.  In January I went home to visit my family.   In February I started this blog, which has been a cathartic exercise that’s helped me process my feelings, spark humor, and practice creativity.  In March, I formally launched Recurrent Pregnancy Loss Association, a nonprofit organization dedicated to eliminating recurrent pregnancy loss through the advancement of research into causes and treatments; to providing support and resources to those affected; and to increasing awareness of the impact of miscarriage and fertility challenges on women and families.  This month I started to draw again – something I used to do endlessly as a kid.  I got out pencils and watercolor paints and created something for just myself, just for the fun of it.

During these months “off,” I’ve remembered that I have passion and capabilities.  But I’ve also observed that my productivity naturally comes in fits and starts, so I prefer flexibility to rigid schedules.  I’ve recognized that that being properly rested makes me an entirely different person, and now I prioritize sleep.  I’ve noticed how much being outdoors rejuvenates me, and make sure to get outside with my dog each day.  I’m slowly coming back to myself.  By letting all my balls drop, I was able to choose which ones to pick back up – my personal relationships and my mental and physical health, for example. I may never return to full-time work in my previous field, and I probably will never restart infertility treatments; but I’m trying to ensure that the choice is deliberate. I still have more self-work to do, but for the first time in a while, I finally feel like I have the energy to do it. 

[I recognize that not everybody is able to leave their job; and I wouldn’t have chosen the circumstances surrounding my departure.  So, I feel compelled to mention that it might have been possible for me to stop my burnout from getting as bad as it did.  I was not practicing self-care – I wasn’t exercising, or getting enough sleep, or sharing my feelings with a supportive community of friends or colleagues.  I didn’t ask for help early enough and I also didn’t take advantage of paid sick leave or benefits like FLMA to manage my health. I encourage others to do as I say, not as I do.] 

#IRepresent #IFAdvocate #Access2Care

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My husband and I recently bought our first house (!!!) at age 37 – roughly seven years after I began wanting to own a home.  I wanted to be able to paint my walls whatever color I chose.  I wanted to purchase furniture that fit my space instead of making the furniture I owned work in the space I lived.  I wanted to think about light fixtures and bathroom tiles and countertops and even landscaping.  I’ve wanted this moment for a long time.  But I have also wanted a baby… and when you can’t have one, wanting a baby becomes an expensive endeavor.

Children are expensive no matter what. According to the US Department of Agriculture, the average cost of raising a child from birth through age 17 is $230,000 dollars.   Thinking about my own childhood and my private college tuition, I know I was much more expensive than that.  I knew being parents would cost money.  I just didn’t think it would cost so much to become parents.

Over the past five years my husband and I have paid more than $15,000 out of pocket on fertility treatments (not including mental healthcare) – and that was with really good insurance coverage.  A single round of in vitro fertilization (IVF) can cost $15,000 uncovered.  Surrogacy – which are doing through an agency in the US – will cost us roughly $100,000.  None of it will be covered.  Had we chosen adoption, the cost for a private agency adoption in the US is around $45,000.

I am not saying this not to complain.  I do feel unfortunate to have endured multiple miscarriages and years of fertility treatments.  But ironically, my ability to do so demonstrates how privileged I have been in this process.  My husband and I are financially secure.  We have good insurance.  We could make the choice to pursue IVF and now surrogacy.  Many other families are not as fortunate. 

According to the CDC roughly 12% of women (1 in 8) have difficulty getting or staying pregnant.  That’s about 6 million people.  Yet only 17 states – less than half – have fertility insurance coverage laws, and only one in five employers provide infertility treatment benefits to their employees (source: RESOLVE, the National Infertility Association).

Like so many things, discussions about family planning and assisted reproductive technologies (ART) touch on issues of equity. Access to fertility treatments favor the wealthy.  Adults making more than $75,000 annually are more likely to know someone who has used fertility treatments than adults making less money.  The same is true for adults with college and postdoc degrees compared to adults with a high school education or less.  (source: Pew Research Center)

Is this because women with more education wait longer to have children?  No.  A 2011 study in “Fertility and Sterility” (the premier journal for obstetricians, gynecologists and reproductive specialists) found that when controlling for age, demographics and fertility characteristics, women with higher household income and higher education levels were more likely to pursue fertility treatments and had higher odds of achieving pregnancy. 

For this and many other reasons, I’m participating in RESOLVE’s Annual Advocacy Day on Wednesday, May 20.  I will be talking to members of Congress about issues like access to infertility treatments, adoption affordability, and NIH funding for infertility research.  You can read about this year’s specific issues and if you’re interested, you can help by doing any or all of the following:

  • Send a letter to your representatives.  It only takes 45 seconds to fill out this letter form and have your voice heard.
  • Advocate on social media.  RESOLVE has put together sample tweets to create at Twitter storm on May 20. 
  • Sign up to advocate in person.  You can register through May 15.  The meetings will all take place virtually, so no travel is required. 
  • Tell your friends and family

Growing up, my mother would tell me her grandmother used to say, “if money can fix it, it’s not really a problem.” Her point was that money couldn’t buy the things that really matter in life. And in my great-grandmother’s defense, in her day assisted reproduction wasn’t an option; she would have considered infertility a problem that money couldn’t fix.  But that’s not the situation today.  Today, if you struggle to have kids, you might still be able to, but only if you can afford it. 

Always the Bridesmaid

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My sister has three young children who are learning to cohabitate, so our phone conversations are frequently interrupted by upset toddlers with sibling disputes.  She usually starts by responding, “I can hear that you’re experiencing some big emotions.”  I just love this phrasing; it’s so validating.  Don’t we all wish we could still run to mom when we’re overcome with feelings?   

With Mother’s Day this weekend, I’ve been experiencing a lot of “big emotions” and have been searching for a verse to articulate these feelings and provide consolation for the fact that I sometimes envy my friends and struggle to be magnanimous.  But I think I am looking for something that doesn’t exist.  There is no grace in envy, only compassion.  Instead, I have become attached to a Shel Silverstein poem called RAIN: 

I opened my eyes
And looked up at the rain,
And it dripped in my head
And flowed into my brain,
And all I hear as I lie in my bed is the slishity-slosh of the rain in my head

I step very slowly,
I walk very slow,
I can’t do a handstand—
I might overflow,
So pardon the wild crazy thing I just said—
I’m just not the same since there’s rain in my head

Maybe I turned to “Where the Sidewalk Ends” because I am nostalgic for childhood and wish I could hug my own mom this Mother’s Day.  Maybe I’m yearning to be a “dreamer” again because of the weight of adulthood and state of the world.  Whatever the reason, RAIN perfectly describes my head full of feelings! I can just imagine my skull as a giant fishbowl of emotions that jostles around on my shoulders and sometimes splashes the folks standing next to me. 

If you have ever learned a friend got engaged and felt an immediate and unwelcome pang of jealousy in your stomach; if you have ever smiled through brunch conversations about boyfriends while pounding back mimosas; if you have ever declined dinner parties because you didn’t want to be the 5th wheel; or if you have ever spent a Valentine’s Day alone with a pint of ice cream and your cat for comfort, then you know a bit about how Mother’s Day feels when you’ve been trying but failing to grow your family. 

“Always the bridesmaid, never the bride.” The sentiment in this statement is relatable.  Not everyone understands infertility or miscarriage, but our desire for love is ubiquitous – it’s described in books and poetry, portrayed in films, and expressed in songs.  So, when we watch a movie like “27 Dresses,” we can relate.  We know that girl, or we have been that girl, or we are that girl.  That girl who longs for someone she can’t have.  That girl who tries for love but always seems to come up short.  That girl who thought she had found lasting love, but then suddenly lost it. 

So, to all the mothers, take your day this Sunday – you deserve it.  But, if you know someone who has been struggling to have a baby, or someone who has lost a pregnancy this year, reach out to them this week.  Let them know you’re thinking about them. They wanted Sunday too. 

And to my infertile sisters and fellow miscarriage survivors, take it easy on yourself.  Do whatever you need and don’t feel badly about it.  If you need to cry, or wallow in self-pity, do it.  Cry until your eyes are dry and your cheeks are caked with salted streams.  Do you need alone time?  Take it!  Luxuriate in laziness – you have no children to home-school!  Sit in your pajamas all day eating bon-bons and binge-watching televisionIf you need to bitch and complain, find a safe friend and do it. If you don’t have a friend, write it down; let the pain flow out of you in vitriolic free verse.  If you need to physically rage, do it (safely).  Take a baseball bat to your pillow, do a kick-boxing video, or scream at the top of your lungs until your throat burns and your chest heaves.  And, if you need to avoid social media and decline Zoom calls, do that too.  Disconnect.  Detach.  Cut your strings and let your fishbowl head float like a balloon up into the sky.  You can come back down to earth next week. 

Future Misgivings

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The moment my eyes zeroed in on “This Is Not the Life I Ordered” during a rummage sale at Third Place Books, I knew I would buy it.  My heart responded with an immediate and emphatic damn straight! 

I know you’re not supposed to judge a book by it’s cover (or title), but in this case, I needn’t have worried.  “This Is Not the Life I Ordered” is written by four middle-aged women who, over the course of their lives, have experienced all manner of heartache – death, divorce, personal illness, unemployment – yet managed to maintain both their grit and sense humor.  I read it in a single sitting and promptly recommended it to friends.

I’ve often wished I could return my uterus to the dealership, like a lemon car, and get a better model.   The question “Why me?!” has been a common refrain throughout my attempts at motherhood – along with a belligerent belief that life should be fairer, and an occasionally tragic attitude.  I’m not saying I don’t have plenty be upset about.  I’ve worked (and continue to work) hard to process my grief, which I feel entitled to do.  However, there also came a point when rather than asking, “How did I get here?” I wanted to instead ask, “Now what?”

All of us at some point (or many points) in our life will be faced with circumstances we didn’t plan for or didn’t want.  These situations are disappointing, and frustrating, and often miserable; but they also afford us an opportunity to imagine a different future.

The book includes a quote by Ayn Rand, from “Atlas Shrugged:”

Do not let your fire go out, spark by irreplaceable spark, in the hopeless swamps of the approximate, the not-quite, the not-yet, the not-at-all.  Do not let the hero in your soul perish, in lonely frustration for the life you deserved, but have never been able to reach.

Admittedly, I have never read Ayn Rand, and I know little about objectivism as a philosophy, so I cannot speak to the true meaning of this quote or it’s context.  To me, it is a reminder not to buckle under the weight of life’s unrealized dreams – to challenge inflexibility and perfectionism.  Life will never look as we expect it to, but we can’t let that fact dull our spirit. 

In “Atlas Shrugged” the passage continues:

Check your road and the nature of your battle. The world you desired can be won, it exists, it is real, it is possible, it’s yours.

But I don’t think this means we can have whatever we want. Rather, I find the operative part to be “check the nature of our battle.”  The world we desire can be won, but only if we are clear what world we’re fighting for.

I ALWAYS wanted kids; I simply couldn’t envision a life without them.  The life I constructed as an adult was built with children in mind.  Without them, it felt purposeless. But my husband was cut from a different cloth.  He thinks kids will be fun and a wonderful way for us to grow together, but he has also always been able to picture a beautiful, full life for us without them.  Family for him is a choice, not a necessity. 

At first his perspective was not easy for me to accept.  I felt like I had to be the driving force behind our family planning.  Fertility treatments were exhausting and emotional; many times, I wanted to quit, but I worried he wouldn’t have talked me out of it.  Paradoxically, his permission to quit was exactly what I needed to move forward.

I felt ashamed of wanting to get off the baby-making treadmill.  I thought it meant I didn’t want kids badly enough and didn’t deserve to be a mother.  Core values about determination and work ethic conflated with my aspirations to be a mother and caused me to believe that if I wasn’t willing to do anything or try everything to have a baby, it meant parenthood wasn’t important enough to me.

Several people (including my mother and my therapist) tried to untangle my knotted emotions.  Others tried to solve the problem by reminding me I could “always adopt.”  Many offered words of encouragement or prayers.  But my husband held my hand while I left dreams behind and considered terrifying possibilities.  Instead of telling me we had to try again, he helped me imagine all the other things we could do with our life – travel adventures we could take, places we could live, relationships we could have with our nieces and nephews.  He made a life without kids seem okay.

I thought about people like my aunt Missy – my dad’s younger sister, the “cool aunt” of my childhood who lived in the city, traveled the world for work, and had a personal shopper.  But more than her “coolness” I thought about the role she played in my life growing up, as a trusted adult who I knew would always be there for me and who often felt more approachable than my parents.  Though she married later and never have kids of her own, I only admired her life; I never thought it was empty or purposeless. 

I talked to my friend from grad school who chose with her husband not to have kids.  She told me that the people she considered her grandparents had been a childless couple who were her neighbors growing up and she challenged me to broaden my definition of family.

I imagined the wanderlust I could indulge without having to consider school schedules and the jobs I could pursue if I stopped worrying about insurance coverage for fertility treatments or paid parental leave. 

Slowly, my future stopped feeling empty and started feeling full of potential.  I accepted a possible reality where I don’t have kids.  And now, when we are actively moving forward with surrogacy, I’m a little sad to give it up.  I liked that possible life too.  It’s still not the one I’d choose, but then again, neither is surrogacy or a one-child family.  This might not be the life I ordered, but I no longer feel stuck in it.

“This Is Not the Life I Ordered” says that in order to become the author of your own life you need the four P’s: purpose, passion, possibilities, and power.  When having kids was the only way I could define my purpose, it limited my possibilities and diminished my sense of autonomy and personal power.  By opening myself up to childless possibilities instead of resisting them, I was able to spark new passions and broadened my definition of purpose. 

Sometimes when we’re down, we don’t need people to tell us it will all work out.  Sometimes, we need people to help us hold the alternative: That things might not work out; and even if they do, it probably won’t look the way we imagine it.  But no matter what, we will be just fine

National Infertility Awareness Week 2020

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This week is National Infertility Awareness Week 2020 and as part of it, RESOLVE, the National Infertility Association started a five day photo challenge. I’ve posted the photos on Instgram and Facebook, but also wanted to share them here.

Day 1 #HonorYourStory

We all have our own fertility journey. You’ll notice that I always refer to mine as a fertility journey rather than an infertility journey, because I prefer the concept of moving towards something positive rather than moving through something negative. I also personally debate whether repeat miscarriage should fall under the bucket of “infertility” since I’ve had no trouble getting pregnant, I just have trouble staying pregnant.

My fertility journey took me through recurrent pregnancy loss (RPL) and secondary infertility (SI) which is infertility after a pregnancy. Along the way I was diagnosed with polycystic ovaries (PCOS) which is the most common cause of infertility among women. They also found I had a septate uterus (SU) which is a congenital abnormality that I had surgically removed. There were other plenty of other diagnoses along the way, but I wanted to call those out to help explain the drawing. The other acronyms are for male factor (MF) infertility, premature ovarian failure (POF), endometriosis (ENDO), and luteal phase defect (LPD) which can all be causes of infertility.

#FurBabyDay

I have two “fur babies” who current endure the role of my surrogate children, but sometimes I go too far. True story: I watch a lot of stand up comedy on Netflix, one night I watched one of Iliza Shlesinger’s specials and she did a bit about anthropomorphizing her dog. I laughed so hard because literally five minutes before that bit I had walked over to my cat, flipped him upside down, and given him a raspberry on his belly…

#WearOrange

12.5% of women struggle with infertility so RESOLVE has started the “1 in 8” campaign to create awareness of the issue. Why orange? Here is the explanation from RESOLVE’s website:

“The color orange promotes a sense of wellness, emotional energy to be shared: compassion, passion, and warmth. Helps to recover from disappointments, a wounded heart, or a blow to one’s pride. Studies show that orange can create a heightened sense of activity, increased socialization, boost in aspiration, contentment, assurance, confidence and understanding.”

#ThisIsMySupport

The past six years of my life have included some truly wonderful moments, but also the most difficult periods of my life. I would not have been able to survive (thrive?) without the support of my husband, my mom, my dad, my little sister, my therapist, and my friends Chris and Christy. These people have been my constant cheerleaders. They’ve held me while I cried, sat with me when I was sad, reassured me when I was nervous, encouraged me when I felt stuck, and listened again and again and again whenever I needed to talk. They are my lifelines.

#ShowYourRESOLVE

RESOLVE chose their name because resolve is what it takes to journey through (in)fertility, and the end of the journey looks different for all of us. Some women carry the “rainbow baby” they always dreamed of. Some take advantage of sperm donors or egg donors. Some families grow through adoption or surrogacy. And some couples choose to live without children. All of these choices take time and must me made deliberately.

RESOLVE is organizing a virtual Advocacy Day on May 20. Participants will be meeting with members of Congress to discuss access to assisted reproductive technology and other family building options. Fertility choices are so personal and so contextual. From the outside it can be easy to assume what you choose or how you would behave if faced with infertility. But I learned I can’t anticipate how I will feel about something until I am actually faced with it. So, I want to make sure that all families are able to make the choices that feel right for them.

My Second Miscarriage

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I have found it surprisingly easy to both talk about and write about my first miscarriage.  Maybe because it was the beginning of everything.  It’s easy for me to start things, to set the scene, to introduce the characters, to begin.  When I was in school, I always wrote great introductions for my papers.  Finishing things was harder.  I have a lot of half-finished projects, a lot of unrealized aspirations.  Finding a clear path through all the things that have happened since the beginning has been confusing.  Determining what parts of my story are worth sharing is difficult.  The beginning of my story lives as a crystal-clear picture in my head.  The middle of my story lives as a big jumble – a ball of tangled yarn.  And if I pull on it, I’m not entirely sure where it will go.  Still I’m determined to continue the telling.  I think it will be cathartic for me to follow the thread to the end.

After our first miscarriage, my husband and I waited two months before trying again.  This was partly based on our doctor’s recommendation and partly based on how quickly my body recovered from the D&C (it took about 6 weeks for my cycle to return).  Once again, we got pregnant quickly. 

That summer I had been travelling a lot for work and was wrapping up a major project with our team in Tokyo, so we decided to use my last business trip as an opportunity to travel through Japan.  During my final days of work, I was exhausted, and thought I might be pregnant.  I had brought one pregnancy test with me from the US.  I tried to wait to use it until after the first day of my missed period; I tried really hard.  But I have never been a particularly patient person.  When I buy new clothes, I wear them right away.  When I buy someone a gift, I want them to open it immediately.  I’m sure this says something about my need to learn to sit with feelings of anticipation or not knowing.  I probably would have failed the “marshmallow test” as a child.  Regardless, I took the test, and it was negative. 

I was disappointed, but unconvinced.  I still couldn’t shake the feeling I was pregnant. I closed out my project and we set off to explore Osaka and Kyoto.  Our first morning as tourists, I dragged my husband through several hours of trying to find a pharmacy where we could buy another pregnancy test.  I took it in the bathroom of a noodle restaurant.  This time it was positive, and I was thrilled – and terrified. 

Not the same terrified as I had been with the first pregnancy.  Not the nervous anticipation of transitioning from woman to mother.  I was terrified because I didn’t want to miscarry again.  Japan is a lovely place to travel, but I was only partially present for it.  Everything we did made me nervous.  I was afraid to do too much walking and tax my body.  I was anxious about all my meals since I wasn’t sure what Japanese food was ok to eat while pregnant.  Returning to the US was a relief. 

About two weeks later I started to spot.  I called my doctor, who told me to come in for a blood test, which revealed that my hCG levels were low.  This can indicate an ectopic pregnancy, so she scheduled me for a high definition ultrasound. 

The ultrasound was conducted in the obstetrics unit of the hospital, in the same room as the exam which had confirmed my prior miscarriage.  I hate that room, and I was expecting bad news.  I was expecting all manner of pregnancy problems.  What I was not expecting was for the ultrasound tech to say, “Actually, everything looks okay.  See, there’s the heartbeat.” Hope began coursing through my veins as rapidly as that little “Flicker” fluttered.

My husband and I left the hospital and walked across the street to the clinic to review the results with our doctor.  The nurse asked me to take a customary urine pregnancy test (why?) which suggested that I was NOT pregnant.  I tried to explain that it was because I had consumed liters of water before the ultrasound, and that I had just seen my pregnancy, but she still tried to send me home.  Ridiculous.

When we finally saw our doctor, we were a jumble of emotions.  My hCG was still low, as was my progesterone, and I was still spotting, but there had been a heartbeat.  She prescribed progesterone suppositories to support the pregnancy and told us to try as hard as we could to relax and proceed as if it was a normal pregnancy. 

I tried to calm down but found it impossible.  I didn’t want to do anything other than lie on my couch for nine months.  I was afraid that breathing too hard might impact the pregnancy.  I asked the little Flicker to hold on tightly.  I promised it we would be excellent parents.  

Several days later my spotting turned to outright bleeding.  I remember laying on the floor of our living room with my knees bent enduring waves of cramps.  They came about every 20 minutes and were always followed by a trip to the bathroom and the passing of a large clot.  I’m pretty sure I know when I passed the gestational sac.  It looked like a large grape.  I squished it in the toilet paper between my fingers.  I’m not sure why, I think I wanted to see if there was a baby inside.  Instead it just crumbled into goop – like bloody cottage cheese.  And I flushed it down the toilet.

What’s odd is that I while I knew I was miscarrying, after the bleeding stopped, there was a lingering hope in the back of my mind that everything was still ok.  I think I expected there to be more blood than there had been, so I was able to weave an elegant narrative about shedding old lining in order for my body to support a new pregnancy. After all, I hadn’t seen the baby come out – just goop.  Once again, I went down the dark and dreamy rabbit hole of Google grasping desperately at other women’s experiences: “I bled like crazy during my first pregnancy and now I have a healthy toddler;” “My hCG levels were slow to rise but now I’m 27 weeks pregnant;” and on and on; and on and on… 

A trip to the doctor a week later confirmed the complete loss.  I drove home, made myself a two-tiered vanilla cake with chocolate butter cream frosting and proceeded to eat a quarter of it.  I “worked” from home for a week while watching Ally McBeal on Netflix but had to stop when she started seeing the dancing baby.

My feelings after the second loss are painful to describe.  One loss seemed like bad luck.  One loss was common.  Sad and devastating, but common.  Two losses indicated a pattern.  Two losses confirmed my worst fears – that it was MY fault – that there was something wrong with ME.  A loss after seeing a heartbeat was uncommon.  The loss after seeing the heartbeat felt like a death.  I had been able to rationalize my first loss.  A blighted ovum almost certainly indicated a chromosomal problem – I couldn’t have controlled that – it wasn’t my fault.  But losing that little Flicker, that felt like a complete personal failing. 

Maybe the reason I’ve avoided telling this part of the story is because it’s sad.  Revisiting these memories puts a pit in my stomach and lump in my throat.  But maybe that’s also why the telling is valuable.  Extracting a sad story from our psyche is like excising a malignant tumor from our body.  The healing work continues, but we have been diagnosed.   Telling my story separates me from it and allows me to evaluate it as a specimen under a microscope.  The story is sad, but I am not sad.  I can decouple those from one another now.  Here is the harder one, the one I’m still healing from and working through:  The pregnancy failed, but I am not a failure.

What it means to be a woman

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I discovered RuPaul’s Drag Race in 2017.  I realize I was late to the party, but I have since made up for my delinquency by watching every season… multiple times. This was in the immediate aftermath of my fourth miscarriage, so I felt utterly broken and was not sure I wanted to go on trying to have a baby (or doing much else).  Remarkably, RuPaul helped curb my depression.  Apart from realizing that Drag Race is one of the best shows on television (FYI season 12 is currently airing), I recognized that the fabulous Drag Race queens were more empowered as women than I was.

Miscarriage challenged my identity as a woman.  The fact that my body would not or could not do what it was built to do made me wonder what it meant to be a woman at all.  In her book After Miscarriage author Krissi Danielsson describes it thus:

[She] may feel as if the loss took a part of her away and violated her as a woman… Because this happened in her womb, the core of her womanhood, if you will, and she wasn’t able to control it, the miscarriage might feel to her like a kind of psychological rape.

Those are very strong words that speak to the trauma of pregnancy loss, and they do resonate with me.  The UK recently published results of a study which showed that nearly 30% of women exhibit symptoms of PTSD in the aftermath of their miscarriage. 

For my own part, I stopped feeling comfortable in my own body. The medicines and medical exams felt invasive.  Progesterone made me feel dizzy, prednisone made me feel puffy and caused me to gain weight, and the enoxaparin shots left long lingering bruises on my stomach that served as a constant reminder that I was not functioning properly.  What’s more, my husband’s and my sex life was completely orchestrated by my hormone levels and ovulation dates, which left little room for desire.  The result of all this was that I felt broken, unattractive, and most definitely NOT like a sexually empowered, confident or capable woman.

During this time, I worked from home, so I spent an inordinate amount of time in pajamas.  I leaned into feelings of inconsequence: I stopped personal maintenance and exercise routines; I was aggressively unsociable; and I shied away from physical affection.  Guilt over the failure of my pregnancies transformed into feelings of unworthiness, which is how I began to define myself. 

Enter the Drag Race contestants, each of whom had overcome their own obstacles in order to pursue their dream and become a beautiful, confident queen.  Their collective courage inspired me and sparked a desire to rediscover my passion and rebuild my confidence.  RuPaul says that we are all doing drag all the time.  What he means is that we are more than our physical and material manifestations.  At our core we are spiritual beings, so the labels we use to define ourselves are simply our drag.  My drag had become pretty sad.

I wish I could tell you all it took was that realization and I was fixed, but I’m working on it.  One exercise I found helpful was when my therapist encouraged me to personify all the different aspects of my personality.  She told me to draw them and give them individual names and characteristics.  The objective was to help determine which part of me was playing the lead and which parts needed a more active role in my life.    

There’s a part of me that’s sassy and charming – she (re)started getting her nails done and it made me feel pretty and frivolous.  There’s a part of me that’s academic and contemplative – she started a book club and in doing so forced me to schedule time with girlfriends and be surrounded by female energy.  There’s a part of me that’s ambitious and assertive – she stood up for herself at work and I remembered I had free-will.  There’s a part of me that’s empathetic and tender – she recently read Self-Compassion: The Proven Power of Being Kind to Yourself by Kristin Neff.  In one of the first exercises in that book Kristin challenges you to speak to yourself as your best friend would speak to you.  My best friend is understanding, validating, supportive, encouraging and kind; she loves me.  RuPaul says, “If you can’t love yourself, how the hell you gonna love somebody else?”  I am working hard to love all the parts of myself – even the part with a misbehaving uterus.

My First Miscarriage

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My husband and I arrived at our first 8-week appointment a little frazzled, a lot anxious, and very late; but our doctor was lovely about it.  We gave him our history and talked to him about my symptoms (they were few, thankfully).  And after a bit of small talk, he said “alright, let’s see how things look.” 

He didn’t say anything for a long time after starting the ultrasound, then he asked if we were sure about our dates.  “The pregnancy,” he said, “does not look as expected for someone 8-weeks along.” He explained it was possible that our dating was wrong and that we were earlier in the pregnancy than we thought, or it was possible that this was something called a “blighted ovum” which meant that while the gestational sac had developed, the embryo never started growing.  He sent us home and told us to come back in two weeks. 

Back in our apartment, I remember sitting on the couch with my husband in silent tears.  We were in complete shock.  I had known “miscarriage” was a possibility, maybe I’d even known it was common, but I’d only ever thought about it in abstract terms, never really expecting it to happen to me.  I can’t find a good analogy.  All I can say is that I had truly believed miscarriage was something that happened to “other people,” unlucky people, older people, unhealthy people, you name it.  But. Not. Me.

It became immediately apparent to me why women don’t share the news of their pregnancy until after the first trimester.  Having to text my family and friends with whom I’d shared the news was devastating. I felt like I’d disappointed them.  Answering their questions was impossible given that I didn’t fully comprehend what was happening.  And holding their feelings was excruciating because I could barely hold my own. 

In my head I knew our dating was correct.  In my head I knew my lack of morning sickness was not a good sign.  In my head I knew this was a loss…  But my heart, oh my heart was a tricky devil.  Her denial was a powerful drug.  With her I scoured the internet to find multiple accounts of people in my situation for whom everything worked out.  With her I prayed to God and painted a beautifully hopeful picture of everything turning around.  Her strong fingers clung to those two weeks like a lifeline.  

The second ultrasound took place in the obstetrics unit of the hospital.  My husband came with me, but honestly, I have very little memory of him being there that day.  I do remember the ultrasound tech leaving the room to get her supervisor – a kind, young, male doctor, who explained as politely as he could that it was indeed a miscarriage.  I do remember sitting on the procedure table, in a dark room, naked from the waist down, and sobbing.  I do remember walking out past all the happy and rotund women in the waiting room with tear streaked cheeks feeling like a wraith. 

I didn’t want to do anything about it.  I believed that eventually my body would “do the right thing” and pass everything naturally (and maybe I even hoped that my lack of bleeding meant some medical miracle was occurring, and things would still work out just fine).  I was wrong on both counts.  At 12 weeks – 7 weeks after the pregnancy had stopped progressing – my body still thought I was pregnant.  This is called a “missed miscarriage.”

I became irrationally angry at the body I had previously trusted.  I felt like my own uterus had betrayed me.  She was so completely delusional, so wrapped up in the experience of being pregnant that she had failed to recognize the non-viable fetus.  I was disgusted with her and finally opted for a D&C. 

My husband had a conflict the day of the procedure, so my mom came with me instead.  She told me I’d be back in that hospital again someday under better circumstances, and I think I believed her.  The nurse asked me if I wanted information about support groups, and I declined.  Nearly a month had passed between my first appointment and the day of the D&C, and by that time a support group felt like too little too late.  I didn’t want to talk about it.  I was anxious to hurry up and move on.  I wanted to try again. 

The nurse also asked me if I wanted to do anything with the tissue, like have it tested or interred. Again, I declined.  I wanted nothing to do with those traitorous cells.  I just wanted them out of my body.    In retrospect, I wish I’d been in mental place to ask for testing.  My doctors and nurses were surprisingly dismissive about the loss.  It was early.  Loss was common.  Testing would most likely show that there was something wrong with the fetus, but there was no reason to believe it would happen again.  My best course of action was to keep trying.     

What I know how is that while it is true that most miscarriages are a result of chromosomal abnormalities, there are other causes.  Testing the pregnancy tissue can help with diagnosis. One study I read concluded that when testing is combined with the standard workup for repeat miscarriage, a definite or probable cause can be found for 95% of losses.  Knowing the exact cause of my losses may not have made me feel better, but it may have influenced the decisions I made about treatment options. I may not have tried some of the experimental treatments; or I may have pursued them more aggressively.  I can’t be sure.  But I’ll never know, because I didn’t ask.

Through this process I have learned to be a better advocate for myself.  I bring a family member with me to appointments because sometimes my emotions cloud my ability to listen, and I want someone there to ask questions.  I do my own research online following appointments.  I ask for referrals and read reviews of hospitals and clinics.  I don’t do this because I mistrust my doctors; I have an immense amount of respect for doctors.  But my doctors will never care as much about my health and well being as I do.  They will never know my medical history without looking at my charts.  They may be kind, and compassionate, and smart, and excellent, but they are human, and they are fallible.  I think we have a personal obligation to ask questions, seek second opinions and conduct our own research, because nobody else will do this for us.  Anyway, this is just one girl’s opinion.  Take it or leave it.